There are some sentences that we all dread hearing. "You've got cancer" is probably at the top of most people's list. Being told that you can't have children is another. When I was eight, a gynaecologist told my parents this devastating news: that I had a very rare genetic condition and that if my ovaries weren't removed I would develop cancer when I reached puberty and die.
Nearly 20 years later I discovered that my doctors had lied to my parents and me. And this wasn't a one-off - it was standard policy (until the mid-1990s) to hide the truth about all conditions like mine. I was 25 when I found out the extent of the cover-up, and the shock of suddenly being told the true nature of my diagnosis - with no support and after being systematically lied to for so many years - nearly killed me. I went into an emotional meltdown.
The dark secret about my body is that I'm the living embodiment of an apparent contradiction, an XY woman (both female and male). Put simply, my body looks outwardly female but I have male chromosomes and one or two other surprises internally. There are several possible types of intersexuality. It is estimated that as many as 4 per cent of the population are born with an intersex condition. We are a largely invisible oppressed minority, and the fear, fascination and loathing our bodies provoke in modern Western culture has held the power to shame and silence me for years.
In the 20th century, the medical and legal establishment tried their best to erase us from society. Despite nature's love of diversity - a rainbow of sex and possible genders - the paternalistic experts took it upon themselves to try to force everyone into two categories: male and female. Binary boxes. Nothing else is acceptable.
We've heard about "heathen" African tribes who carry out clitoridectomies, but not much has been written about the genital surgery done to babies and young children - to make them look "more normal" - by gynaecologists in Europe and North America. These operations are often for entirely cosmetic reasons and they are frequently damaging to adult sexual responsiveness and/or fertility. Doctors have rules about how big a clitoris can be. And if a baby has a small penis he may be reassigned as female because vaginas are easier to make than functioning phalluses that pass the "locker room test". Ninety per cent of intersex babies emerge from the operating theatre as girls.
This infringement of children's human rights is starting to be challenged. But surgery is still happening. When an intersex baby is born, an "expert" is called to decide which sex to assign it to, and the parents are often pressured to go along with this decision. The parents are then expected to collude with society's rigid socialisation process (pink for a girl, blue for a boy) and not tell their child who they really are.
The battle to survive my painful history and the continuing struggle to be free to think outside of the male/female boxes and to speak up for intersexuals - by challenging the medical and legal hegemony - has been and continues to be the biggest challenge of my life.
My journey began in 1977. For a few months I'd been having some abdominal pain and after various tests I was referred to see a world-eminent gynaecologist (imagine God in a white coat). After being examined by him and what seemed like an army of medical students, he announced to the room that I was a "very special little girl". This proclamation was, it turned out, something of a mixed blessing.
I can remember the pain in my father's voice and my mother crying. At first I didn't understand why they were so upset. But I soon worked out that no ovaries equals no babies. My surgery happened as the Queen was celebrating her Silver Jubilee. I was the only child alone on the ward. I tried to run away, but was caught and held down by the nurses. I soon realised that I had no human rights and this was confirmed when, the night before my op, I was given an enema in front of my mother.
I'd been a happy little girl up until my op but I returned to school a very different child. My experiences in hospital drove me to re-enact with other children - compulsively playing doctors and nurses - and my growing self-hatred and loner behaviour soon attracted a teenager who befriended me and sexually abused me until I was 11.
Having no ovaries meant that I had to take oestrogen hormone pills from the age of 12 and on one of my regular trips to see God, he broke the news that as well as being infertile, I wouldn't be starting periods - "you don't have a womb" and "you may not grow any pubic hair". These shocking statements were delivered as simple matters of fact and then I was left to make sense of them. I couldn't speak to my parents. My shame was too great. Things got worse when I was 14 or 15: my gynaecologist examined me and said my vagina may be too small for comfortable intercourse. He sent me home with a set of NHS dildos (small to very large) with little explanation about how to use them. I felt so freaked that I threw them away.
My gender identity as a girl had never felt like a very good fit. I was a tomboy from a very young age and much preferred Action Man to Tiny Tears. Although I rejected dresses and pig-tails and liked climbing trees, I was interested in boys. But as my teens progressed, I began to feel like I was failing as a woman. Not being able to have children really undermined my self-esteem. I worried a lot about whether a male partner would stay with me if I couldn't give him a family. I was still seeing different gynaecologists twice a year for check-ups and none of them broke ranks and told me the truth.
When I was 17, I was really quite surprised to fall in love with a woman. Coming out as a lesbian was a very happy experience for me. I'd run away from school to be a Greenham Woman and finally I belonged to gang. Later, I moved to London to read anthropology and communications at Goldsmiths College and joined the gay rights action group OutRage!. Derek Jarman and I became very good friends on a demo - lying under a "Gay Rights Now!" banner in the middle of Charing Cross Road. My friendship with Derek got me really thinking about sexuality and gender, and I soon dropped the label "lesbian" in favour of "queer": with its rejection of "heterosoc's" rules. Selfishly, I wish that Derek hadn't died when he did (1994) because it was later that year that a new gynaecologist finally told me the truth. Derek wouldn't have been shaken by my news. He'd have helped me see the positives and challenged the gang of assassins that took over my head.
Even though I was knowledgeable about the cultural construction of sexuality, nothing prepared me to deal with the facts about my rare genetic condition - which is now called Androgen Insensitivity Syndrome (AIS). Being told that on a chromosomal level I am male (XY, not XX) and that the "ovaries" that were removed from me were in fact undescended "testes" was a complete shock. (No, really! On a good day, I can laugh about it now). My body is a 1 in 30,000 genetic fluke and I am nearly completely insensitive to testosterone, so even though I have male chromosomes I didn't develop properly along male lines (all foetuses begin as female and exposure to the mother's testosterone makes the XY baby's body grow male features).
Many XY women are happily heterosexual. For me, my bisexuality and sense that I do embrace both sexes has led me to take part in an interesting experiment this past year. It transpires that the operation I had as a child may not have been necessary - some young XY girls and women today choose to keep their testes and produce hormones naturally. My endocrinologist, Dr Conway, and I have been changing my hormone replacement therapy: from just oestrogen to a mix of both oestrogen and testosterone. It has given me more energy, a better sex drive and I feel more fully alive. Despite being "immune" to testosterone, my body has gone through some physical changes (better muscle tone, more pubic hair, bigger clitoris). Emotionally I have changed, too. I am more aware of my male energy and have cried a lot less. Strangely, I am also feeling much more comfortable with my femaleness than ever before.
I can honestly say I don't regret anything that happened to me - except for the infertility - because it has made me very strong. Through doing a great deal of soul-searching and thinking about "Who Am I?", I have gained an enlightened view of the male/female power struggles and the search for balance.
I'm currently investigating mounting a challenge for proper recognition in law of the right to be called what I am - intersex. I want it to be written on my passport and I want the freedom to marry a woman in church. This campaign for intersex rights will benefit us all. Why should we be forced - by that rigid last-century thinking - into those uncomfortable categories. Surely we will all benefit from being free to roam and not so boxed in?
Androgen Insensitivity Syndrome is one of a number of rare biological intersex conditions.
People with AIS are born with the XY chromosomes of a male, undescended testes (which may be mistaken for ovaries), and the external genitalia of a female. They are genetically male but appear female.
In a normal XY foetus, the androgens (male hormones) produced by the embryonic testes influence the development of male genitals in the womb. But in AIS, the foetus is unable to use the androgens and instead develops female genitals, while lacking internal female organs like ovaries.Reuse content